Simon’s Story: Part Five

The next day Simon seemed to be in a better mood which was probably because his brother came by to play. He also ate an entire bowl of oatmeal as we waited to be moved to rehab.

His strange eye roll behavior persisted though and it really started to concern me. I brought it up to the doctors (something I slightly regret now because it delay our release from PICU, but at the time we had no idea what was going on and since everything was new from his head injury, we questioned everything). The doctors were concerned for the possibility of seizures, so they told us that they were going to do an EEG to check for seizures. This was incredibly tough news because we were going to have to stay in the PICU another night (yet again) and it meant that I was going to have to keep Simon up all night, so that he’d be so sleep-deprived that he would sleep through the procedure in the morning (instead of putting him under).

To say that night was tough is an understatement. Simon was not a happy camper at not being allowed to sleep, as was I.

I did my best to entertain us both by watching tv shows, singing and dancing.

It was a long night.

In the morning, the woman came and Simon was finally allowed to go to sleep. She then proceeded to put fifty little electrodes with colorful wires on his head and covered them with a bandage. The procedure took about an hour.

The results came back and we were told that they showed brain movement consistent with his level of head trauma, which is also similar to seizures, but since they didn’t see him seizing, they were almost sure he wasn’t having seizures. Because of this, they weren’t going to put him on any new meds.

I was finally able to sleep, as soon as Simon slept peacefully and yet I couldn’t shut my brain off. I was literally so tired, that I couldn’t go to sleep. I watched shows on my phone and read magazines hoping that I would get drowsy, but I continued to be exhausted and wide awake, possibly with the excitement that we would FINALLY be moving to rehab. I couldn’t wait to move on with a “new normal”.

We were so thankful for all of the consistent care that we received in PICU, but at the same time, it’s a really difficult place to be. All around us were very sick kids, ranging from newborns to teenagers. On one side of us was a baby that had the saddest cry. I wanted so badly to be able to go over and hold it. On the other side was a teenage boy that had had excruciating leg pain and while waiting in the ER, he had a stroke and had to be put in a medically induced coma. Afterwards, they found out he had lymphoma. Because there were patients with such compromised immune systems, a limited amount of visitors were allowed at a time, only two to a room, including the parents (we broke this rule a lot). Plus, to get into the room, you had to call and be buzzed in, which was irritating, especially since you had to go outside to go to the bathroom. The doctors and nurses had rounds from 7-8 in the morning and evenings where they discussed the patients. Because they discussed confidential information, there was no coming in or going out during that hour. That meant you had to be in your room or out of the PICU entirely at that time, which was equally frustrating.

We waited all day, until they finally came and moved us that evening.

Our room at rehab was incredible. Because the building is new, only about a year old, the facilities were beautiful. We had a bathroom actually IN our room (let me clarify: our PICU room had a bathroom, but it was for patients only), a gigantic place to sleep and move around and our view was much nicer. And the best part was we could have visitors come and go as we please. Jesse went back to work, so I was able to stay with Simon for his first week of rehab.

When we checked in, our nurse mentioned that she was wondering if she would see us because she had been following our story on Facebook. I should tell you again how absolutely blown away we were by the amount of people that were praying for us and following Simon’s story. My amazing friend, Jenni, who started the Facebook page “Praying for Simon Frey”, told me that the day it was created she watched the number of people “like” it jump up about a hundred every hour! People can say what they want about social media, but I think it is a wonderful “prayer chain”, especially for the distance it covers.

The glue the technician used to put the electrodes on Simon’s head left his hair pretty sticky and crazy. I was able to take a shower with him, which was a little scary considering the last time he took a shower. That’s what got us into this mess. But, it was also freeing in a way because he was no longer hooked up to any more machines.

In the morning, on January 10th, after being naked for a week and a half, our little nudist was finally able to put some clothes on.

The nurses came in and brought us a mat to play on as well as to tell us our schedule for each day. Because we were in rehab, Simon would be getting a strict schedule of speech, physical and occupational therapy for an hour each day. When we went to physical therapy, they were really impressed with his balance and proprioception. He was already attempting to crawl and tried to go to a stand from the floor! I was overjoyed to see how strong Simon was and that things he knew before the accident were coming back to him automatically. They told us that it was a benefit that he was ahead physically before the accident because it is easier to relearn things you already know then to learn things for the first time.

Simon seemed much happier being in our new room with the ability to move around and explore. Plus, he was no longer hooked up to any machines. Ronald MacDonald also had a volunteer stylist that came to our room and shaved the rest of his hair off, since they only shaved half of it during the surgery. He wasn’t too happy about having anyone touch his head, but he looked SO much better after it was done.

Later that day, Simon was sitting on the floor, leaned forward and pushed to a stand. So amazing! We were even able to go outside and play around on the hospital playground. Simon has always been much happier to be outside.

The staff also brought us a high chair and Simon was able to feed himself, which was helpful since he’s a fiercely independent child.